Project Acceptance

Here are a few pictures that Daylen and I got to take as part of a project known as 'Project Acceptance'. The photographs were taken by Charley Green. Below is a website where you can read about the project and get to know the people on there!

 http://projectacceptance.com/

http://www.facebook.com/ProjectAcceptance?sk=info

HLHS video of Daylen

Genetics testing results!

After waiting for almost 3 weeks on Daylen's genetics test...

we finally got the answers in the mail today...

We had a genetics test done on Daylen to see if there were

any chromosomal abnormalities

to see where Dave and my future stood

as far as having future children without birth defects.

Well.......the test came back.......

YAY!!!

So what does this mean?! 

It means that the next child (just like the rest of the population) only has a 1% of having a CHD

but because we already have a child part of that 1%

it puts our chances at a tiny 2%

I'll take that 2% chance over any other number that it could have been
 if Daylens's CHD was genetically formed. 

Clapping and waving :)

Daylen started clapping and waving around 7 1/2 months old. 

My mom taught him the clapping thing 

that goes along with a lil german kiddy rhyme

its too cute :)

he claps during diaper change now

and smiles 

cuz he knows he's smart 

Neurology and genetics appointment

Last week Daylen had an appointment with the neurology center to see how his growth and development was. They did a few tests on him and turns out he scored very well for a heart baby! His motos skills reached a high of 115% meaning he's doing things that babies a month ahead of him are doing! Physically he is measuring to be his age. They were very pleased with him and asked to see him again in 6 months! He weighed a good 17 lbs and 4 oz and measured 26 in long.

While at the neurology center, Dr. Escobar recommended we do a genetics test on him to see if his birth defect happened genetically or if it just happened. They can determine if our future children will have higher chances of having birth defects too. I am anxious to hear the results because I am not sure if I can handle another HLHS baby. As much as we love Daylen, its very hard to deal with and who is to say if the next one doesnt have a worst case of it. We will keep you all updated as soon as we hear anything in the next week.

OH MY A TOOTH!

A TOOTH IS COMING! 

:)

Since Daylen was 2 months old, I thought he was teething and THOUGHT he was going to be an early sprouter but I was wrong...... I was very wrong!

5 months go by of him fussing and chewing on everything from toys, bibs, clothes, my arms, face, and just about anything! Well his 7 month birthday is tomorrow and today I saw his first tooth showing! :)

7 month cardiology appointment

It's been a little over 2 months since Daylen had his hemi-fontan surgery and he recently had his 2nd cardiology visit since then!

They took an EKG of his heart and it all came back great! His OSAT's were 86 and his blood pressure was in normal range! :)

They were going to skip over the echocardiogram but Dr. Parikh decided he wanted some updated pictures of the glenn so thats what went down! Everything looked great and Dr. Parikh couldn't have been happier with him!

He mentioned his baby eczema (just like every visit) and said since he is older than 6 months now, his skin condition will probably stay til Daylen is around 2 years old. UGHHHH! but oh well! I've kept the rashes to a minimum so thats all that matters!

Other than that, all is gravy with lil Daylen Lee!

6 month check up

So much time has gone by since I posted last and I feel like that is a positive thing because that means nothing eventful has happened!

Daylen is 7 weeks post hemi-fontan and he is doing great! We can start treating him like a "normal" baby by picking him up however way we want! No more scooping! :) His aldactone has been reduced to .6 mL every 24 hrs along w Lasix twice a day and baby aspirin every other day!

Daylen weighs 16 pounds and is 26 inches long! His height didn't move at all so the pediatrician is wondering if they had a measurement error last time! His weight went from the 8th percentile all the way up to 25th percentile so he's slowly outgrowing the rest of the munchkins :)

Daylen can sit really well but still plops over after a few mins. He is now reaching and stretching for things and has a hard time sitting still! I also think a tooth may be coming soon! :)

Daylen has a cardio visit in 2 weeks along w shots tomorrow!

Post-Op Cardiologist Visit

Daylen had his check up visit with the cardiologist. :)

He weighs 13 lbs and 13oz, and I totally missed if the nurse mentioned his length :( boo.

He got his 1 single stitch taken out - he DISLIKED this but who wouldn't?!

He was also given an echocardiogram and Dr. Parikh (his main cardiologist) said everything looked great. I also over heard him talking to the nurse and mentioned that Daylen's PDA is still open. As mentioned in past post's after Daylen was born, the cardiovascular team discovered from a heart cath that Daylen's PDA did not close (like it does in most babies) and it was acting like an artery which gave Daylen extra oxygen supply. 

They checked his SAT levels and they were 90! WOW!

Finally my baby is getting good oxygen supply and we can definitely tell a difference from before. 

His SAT levels were 70-75 before his hemi-Fontan. 

His medications remain the same, but Daylen is no longer needing pain meds.

He goes back in 6 weeks for another check up. <3

Making silly faces while shoppin w/ his momma.

Past pregnancy related

So I know this is a blog that I started for my son, in hopes that one day he will take over in writing about what goes on in his life and all (if not thats fine too) but I feel this is pregnancy related to when I carried him so I figured it's legit to wright about. <3

As some may know, I had gestational diabetes while pregnant with Daylen. Before pregnancy, I was pretty healthy at 139 lbs and 5'5" which gives me a pretty normal BMI and a pretty slender figure (with flaws of course) so it's not like I was doomed from the get-go to have diabetes. During my pregnancy, I gained a total of 46 lbs (not bad really) and it landed me at 185lbs when I was induced. My diabetes was not bad at all....I was put on a low carb diet and was told to do a lot of walking or swimming. Well I didn't walk too much, and it was winter so where was i going to find a pool???? After I gave birth, I was told the typical thing that I would most likely not need to worry about my sugars anymore bc it goes away for most women..........wrong. Not this girl! I breast fed for the first month so my sugar was completely fine until I stopped. My blood sugars were going crazy but I figured its just my body getting rid of the hormones I had from breastfeeding still. I ignored it for a month or two, althought getting symptoms still of having diabetes. What are symptoms of diabetes you may ask?? Well I had blurry vision, my hands felt swollen, I had "floaters" in my vision, and I was sooo thirsty all the time. I lost a majority of the baby weight right after, about 30 lbs, and now I am down to only needing to lose the last 10 lbs I put on from pregnancy (5 months later).

So here I am today, I met with my OB/GYN to get a screening done because I still have high blood sugar but it is only 2 weeks prior to my monthly menstrual cycle. After my cycle comes, it drops again and becomes normal for a few weeks until its that time of the month again. I don't think it would classify me as a diabetic considering my A1C's are normal, but I atleast want to get this figured out and under control in case I am in the pre-diabetic stage. I am only 24 years old, way too young for type II diabetes :(

I will find out next week what is going on (although he scheduled me to do the test when my sugar wont be high so if the test comes out fine, I may go get a second opinion or ask another test be done at the right time)

Terrible day

My poor baby has been teething so badly that he needs something in his mouth 24/7. 

He has had such a terrible day today. Barely would take the bottle for me during the day.

He did fine in the morning and evening.

It was big HECK NO when it came to eating sweet potatoes and cereal.

He refused to sit in his high chair to eat the little that he did.

He wanted to sit on my lap all day. I tried his pain meds and that only helped for a little.

His teething tablets are recalled so we can't use those anymore. 

He has been sooo irritated, but we caught a few smiles in him today.

He looks grumpy when he wakes from naps.

His blankets and bibs are SOAKED from his drool.

(He even prefers to have those in his mouth)

He can't quite get the whole 'grasp a teething ring and take it to mouth' technique yet.

When he finally took a nap, I had to take a snapshot of the poor little guy.

Fell asleep with fingers in his mouth. 

He's still precious tho. <3

Bad medicine taker

Now that my son is post hemi-fontan he takes several medications and one being a pain medication called Lortab. It takes really nasty (I would know because my 5 month old has spit it back into my face a few times now) even though its apple flavored. We give it to him in a syringe because mixing it with milk would scar the poor baby and he would not drink the milk - as told by our pharmacist.

Well....now I have a new problem on top of him fighting me when it comes to his pain meds....He is starting to refuse his milk. I'm not sure if its the nipples and bottles that he is now back on at home after using the hospital ones, or if we may have given his milk with the Lortab taste still lingering in his mouth.

Home sweet home!

It's soooo good to be home! Best feeling ever to step inside of the door, lay on my own couch, and YES - use my OWN bathroom and shower! I also get to hold my baby without any wires or tubes!! Daylen is back to his normal self with his little at-home attitude! He thinks he runs this place ;) but maybe he does?

I'm so happy to know we won't have to be back at the hospital (only for cardio visits and caths for progress) until next year for his fontan! As much as that place can be happy looking - it is a sad depressing place with all those sick children having surgery or going through chemo therapy. I can't count how many times we heard screaming children next to us or down the hall. It breaks my heart :(

Seeing him this past week has put a few thoughts into my head about how next year will go with the Fontan surgery........but I will stress about that later! :)


**
A few other things on my mind as we were able to go home - a sweet little girl named Aly who had her Fontan surgery today and she rocked it! Also, precious little warrior on my mind daily, Dylan who is growing and getting strong to complete his norwood.

Hemi-Fontan Surgery

Daylen's hemi-fontan was a success! It began at 8:40 on the 22nd of March and was complete by noon. He has been such a trooper. Now it's recovery time - which he is doing magnificant at! 

To see daily updates 

on progress and pictures

go to the Hemi-fontan tab on the main page. 

It's crunch time!! 5 days to go

5 weeks ago, we were told Daylen's hemi-fontan would be scheduled for March 22nd

my heart sunk.

:(

Now we are 5 days away

and my heart is still sinking.

Why does HE have to be the one to undergo all this crap???

I can name so many that are willing to trade places with him 

:(

First Steps Assessment

First Steps came by the other day and gave Daylen the thumbs up on his growth and development! They said there is nothing to be concerned about so if I want to call them in the future after his surgery, then I can do so! Hopefully that won't be needed because I think Daylen will be a spunky 5 month old after he's done recovering!! :) Positive thoughts!

Here is an updated pic of Daylen at 4.5 months! 

Learning to sit!!

Oh goodness! So much learning has been happening for this little guy!

And so soon before his hemi-fontan! (I hope it doesn't put him behind)

Lil Daylen Lee no longer thinks he needs to rest his head!

AND he can now pull himself forward and can sit for a few minutes! 

He's 15 weeks right now and it seems so soon for him to be doing all this!

Hemi-Fontan Date

After Daylen was transferred to the PICU from his heart cath, he did quite well until night time when he needed oxygen. His oxygen-saturation levels kept dropping to the 30's and 40's after he became fussy. They were maintaining in the mid 60's all night until morning time when they were back up to mid 70's. I can't really say I was too worried about him as much as the nurses were because to me he seemed normal. As his mom of 3 months now, this fussiness is normal and he's always breathing fine to me. Never seemed short of breath, never looked blue, and his nails have always looked fine. I was worried they wouldn't let us take him home the next day like planned, especially after the nurses called in the cardiologist to come take a look at him. It really frustrates me how they track the SAT levels with these probes that are kept on by bandage. It just seems like it's never in the "right" place and his sat's are always all over the place unless he's sleeping. It worried me though because his first surgery at 1 week old came unexpectedly when his saturation levels had dropped to the 40's and they decided immediate surgery for a central shunt was best.

Other than that, he did good. He at well, not the full amount he usually ate, but there was no vomitting. He currently weighs 11 lbs and 6 oz so he's almost to the 12 lb mark that they want him at for the hemi-fontan.

His hemi fontan is scheduled for March 22 around 7:30 am. He is the first case so we won't be waiting on anyone else's surgery that day. The next 6 weeks are going to be tough for me. I don't want to hand him over so they can cut open my lil boy and mess with his lil precious tiny heart, but if i dont....it wouldn't be good for him either. :( I can just hope for the best and hope that he pulls through!

Love him!

Today was a good day.

Daylen had his heart cath this morning, which went really well! Our cardiologist was able to show us the videos of his heart and we got to see where and how the shunt was working! Kinda neat.

On the unfortunate side, the Dr. mentioned scheduling his hemi-fontan in 6 weeks :( that's so soon and he will be 4 1/2 months old. I knew the minute he told us that every day til the surgery, I will find myself bawling my eyes out at least once a day. It's a bummer that he has to go thru this, but if he didn't he wouldn't be here with us today.

I will receive more detail about his surgery plan tomorrow so keep an eye out!

Daylen in his hospital gown - getting ready to be whisked away for his procedure.

(Daylen was called a female twice today btw! not sure if it's the name or the hair???)

sleepy bear :) - after his heart cath

Heart Cath - The night before

It took me all weekend to try and come up with a GOOD plan on how to tackle the last few hrs leading up to arriving at the hospital for Daylen's heart cath. 

My plan is to keep him up til midnight, feed him, and let him sleep his lil heart out until it was time to leave the house. 

Daylen's usual schedule is to go to bed around 7pm...sleep for 5-6 hrs, wake for another feeding, sleep for 4 hours, eat again, and sleep for 2-3 hours. This puts him waking up everyday around 7-8 am. 

It's 9pm right now, and my plan is already failing. He fell asleep already and i can't keep him up...even if i have him sitting up on his butt - he still sleeps! I can only change his diaper with cold wipes so often b4 his lil bum gets raw!!!!

I guess I will just have to suck it up an deal with a screaming baby by myself in the morning :/